REPRODUCTIVE HEALTH IN MALES WITH CYSTIC-FIBROSIS - KNOWLEDGE, ATTITUDES, AND EXPERIENCES OF PATIENTS AND PARENTS

Males with cystic fibrosis (CF) are generally infertile as a result of aberrant development of Wolffian duct derivatives. The personal signi ficance of this and related reproductive and sexual health (RSH) issue s is unknown. We set out to describe the knowledge, attitudes, and exp eriences regarding RSH in a group of adolescent and adult males with C F, as well as the knowledge and attitudes of parents. This descriptive study was based on a semi-structured interview utilizing in-depth int erview techniques. Questions included aspects of knowledge, attitudes, and experiences. Adolescent (aged 14-17 years) and adult (at least 18 years) males attending the Children's Hospital Cystic Fibrosis Clinic , Boston, MA, USA, or hospitalized at the Children's Hospital over tha t period were eligible; the accompanying parent of the adolescent was also interviewed. Consecutive eligible males were interviewed over a 3 month period. Summary data are presented, attitudinal data are analyz ed qualitatively, and a selection of representative transcript data ar e reported to describe the range of opinions. Fifty males (10 adolesce nts, 40 adults) participated; this constituted a consecutive sample of 44% of the eligible clinic population. Ninety percent of adults, 60% of adolescents, and 50% of parents knew of male infertility. The mean age (+/-SD) at which adults recalled first hearing this was 16.0 +/- 4 .7 years and 13.9 +/- 1.6 years for those adolescents who knew of infe rtility. Nineteen (48%) of adults and 5 (83%) of adolescents first hea rd about infertility from their health care providers. Ninety percent reported no major distress upon first hearing about infertility during adolescence. Increasing significance of infertility with maturity was reported by 12 men (30%); only 4 adults (10%) reported that infertili ty was not a significant aspect of CF. Forty percent knew that males w ith CF have a small volume ejaculate, but none had been told this by a health care provider. Thirty percent of men had semen analysis perfor med and all were azoospermic. We conclude that the majority of males w ith CF know of likely infertility. The significance of this knowledge changes with time. Poor knowledge and confusion surround a range of RS H issues in males with CF. (C) 1998 Wiley-Liss, Inc.